"What's wrong, Grandad?" Helping children understand dementia

When a much-loved family member is living with dementia, knowing how to talk to young children about what’s happening is vital.

Dementia affects nearly 1 in 10 Australians over the age of 65, and three in 10 of those over 85, but it’s a condition that can impact the whole family. 

It can be particularly confusing for younger children – they know something’s changed about grandma or grandad’s behaviour, but they don’t know why. Learning how to help them understand what’s happening may help. 

“I think it’s understandable that a young child’s feelings might not be at the forefront of a family’s minds when they’re dealing with a diagnosis of dementia,” says Brighid Brodie, family clinician at Alzheimer’s Australia VIC. “It’s a stressful time and, particularly if a child isn’t asking questions, it’s easy to think they’re coping.” 

But, says Brodie, children can be perceptive and can very quickly place themselves at the centre of things. “The danger is that by not talking to them, they can assume that the change in a grandparent’s behaviour is because of something they’ve done, and then start blaming themselves,” she says. 

Here are a few suggestions to help you communicate with your young children or family members about dementia. 
Mother talking to her son

Break the ice

Reading an informative storybook together can be a good way to start a conversation. “Discovering how having a family member with dementia plays out in another child’s fictional world can make the topic less overwhelming,” says Brodie. “And it can help parents ease into the subject – your children may begin asking questions, or you can talk about how a grandparent does some of the same things as the character in the book.” 
Alzheimer’s Australia (fightdementia.org.au) has an extensive library, and you’ll also find titles and some books available for download at dementiainmyfamily.org.au.

Encourage questions

When you first talk to your children, don’t be surprised if they only ask one or two questions. “That’s normal,” says Brodie. “But they may want to know more, as things occur to them, so let them know they can ask you anything whenever they like.” And don’t be surprised if some of the questions seem “random”.

“Children often focus on how things impact them directly, so some questions may seem a little selfish,” says Brodie. “They may ask things like, ‘Will I have to share my bedroom if Nana moves in?’ But treat every question seriously and answer it with the attention it deserves.”

Be honest

While it’s crucial to talk about things in an age-appropriate way, it’s important to be honest. “Always be led by the child and what they want to know, but never shy away from answering the tough questions,” says Brodie. “It’s not healthy to create a sense of false hope that grandma or grandpa will recover from a disease that we don’t yet have a cure for.” 

Share how you’re feeling

Seeing how a parent copes with difficult situations such as a serious illness in the family can help children learn valuable skills around managing painful emotions.

“If your child sees you crying about a loved one’s dementia, don’t try to brush it off by saying you’re fine,” says Brodie. “That will only confuse them.” Instead, be honest by using simple language to explain why you’re crying and how you feel.

If you need some support with caring for someone living with dementia, you can call Bupa's Aged Care Support Line who can give you tailored information and tips.

Support their emotions

Young children can experience a range of emotions in response to a grandparent’s dementia, everything from grief and sadness, to fear and even irritation. “Let your child know it’s okay to feel whatever they’re feeling, and encourage them to find healthy outlets for those emotions – that’s another learning experience that will stand them in good stead for the future,” says Brodie.
For more information, visit dementiainmyfamily.org.au, an Alzheimer’s Australia VIC website that provides support and information for children impacted by dementia in their family. There’s information about discussing dementia with children, too. 

Bupa aged care support line

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